July as the “Cost of Care” Awareness Month

By Jonas A. de Souza

With a 2013 median US household income of $51,539, it is clear that having treatments that cost over $100,000 per year is unsustainable. However, this is exactly what is happening to patients who need these treatments. The last decade has brought tremendous advancements in drug development through the creation of unique, targeted therapies. However the cost of care has skyrocketed in parallel to the increase in innovation. This increasing cost of care has led to a new side effect: financial toxicity. What exactly is this side effect? We define financial toxicity as the impact of the costs of a disease and its treatment on a patient’s quality of life.

Financial toxicity is present in many diseases where new, innovative therapies have changed patients’ survival, such as hepatitis and rheumatoid arthritis. So, what can we do to address this growing side effect? Increasing awareness of the problem and understanding its impact on patients and their families is the first key step. Following the lead of the ACP-ABIM Cost of Care initiative, our team at The University of Chicago has developed a website (www.costofcancercare.org) to do just that in the cancer care setting.

Our mission at www.costofcancercare.org is to increase awareness of the impact of financial toxicity on patients and caregivers and explore its repercussions on all aspects of life, including compliance with therapy and psychological distress. We have compiled general financial resources as well as therapy-specific financial assistance links to help patients. We also have a short 11 question tool (the COST tool) available for patients to calculate their own financial toxicity. Instead of measuring patients’ out-of-pocket costs or sick days, our COST tool allows a holistic measurement of how different cost parameters impact patients’ quality of lives.

Through our website patients can also participate in research. We are interested in understanding how financial toxicity impacts the lives of patients with different cancers, who are being treated with a variety of therapies. By learning about the financial toxicity of cancer patients from across the country, we will learn more about the impact of cancer costs on quality of life and can better help patients.

To make strides in the research on financial toxicity and enact real change, it is important for all of us to start to think outside the box. June is a month that is heralded for many aspects of cancer care: the American Society of Clinical Oncology (ASCO) meeting as well as it being “Immunotherapy Awareness Month.” The National Cancer Survivors Day is also in June. We then pose the following idea: given the skyrocketing prices of healthcare, July should follow as the “Cost of Care Awareness Month!”

We believe that patients’ understanding of their financial toxicity is key to making informed decisions about their cancer treatment. Integrating information about financial toxicity into cancer care decision making will take us one step closer to the ultimate goal of a truly personalized cancer treatment. Follow along with us at https://twitter.com/Cost_CancerCare and https://www.facebook.com/costofcancercare as we learn more about financial toxicity and keep working to improve the lives of cancer patients.


Jonas A. de Souza, MD is an Assistant Professor of Medicine at The University of Chicago and winner of the Costs of Care and ABIM Foundation Teaching Value and Choosing Wisely® Challenge. @Cost_CancerCare

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